This is the archived Summer 2014 Newsletter. Here by mistake? For the current newsletter, click here
SAVE THE DATE
Friday October 10, 2014
6:00 pm - 10:00 pm
San Francisco Design Center Galleria
101 Henry Adams Street, San Francisco, CA 94103
Please join us for an elegant gala with wine, cocktails, dinner, and auction
Patxi's Pizza Noe Valley Fundraiser
Wednesday, August 13th; All Day
Patxi's Noe Valley, 4042 24th St., San Francisco 94114
Let's fundraise over pizza, salads, and more!
On August 13th, Patxi's Pizza Noe Valley will donate 10% of the entire day's sales to Support for Families. Please support us by dining at Patxi's or placing a to-go, delivery, or catering order (T: 415-285-2000) on our fundraising day.
THANKS FOR YOUR SUPPORT!
The 2014 Information and Resource Conference Another Tremendous Success
Thank you to 25 workshop presenters, 4 keynote speakers, 81 exhibitor organizations, 100 volunteers, staff and board, and nearly 500 parents and professional attendees who made the conference such a success.
Click here for conference photos
Old-Time Fun at the Old-Fashioned Spring Picnic
Thanks to everyone who joined us at the Old-Fashioned Spring Picnic in Golden Gate Park on May 3rd!
Families had fun playing on the grass and participating in art, music, sports and other activities. It was a great event. We are looking forward to bringing back Access to Adventure next spring in 2015.
Click here for more photos
photo courtesy of James Fanucchi, SFCD volunteer
Return to top
5 Tips for Partnering with Your Child's Providers
As your child’s most consistent caregiver, you know your child/youth with special health care needs (CYSHCN) in ways that no one else does. You want to be sure that your child’s health care needs are met.
You need to share what you know with the providers who treat your child. Tell them if something is wrong with your child. Let them know how your child responds to a treatment or medication. You can develop partnerships with your child’s doctors and other providers. These partnerships will help your child receive the best healthcare.
Start with clear communication between you and providers. Be sure to share your cultural differences so that they do not become barriers to access and service. The following tips will help you prepare for an office visit, talk with your child’s provider, and learn more after the visit.
1. Trust your instincts:
Your instincts and intimate knowledge of your child are critical to his/her medical care. Share what you know and what you observe with health care providers. Call when you see a problem. Providers rely on information you give.
Never be reluctant to ask a question about how your child is doing, how a medicine is working, or what to expect during a treatment. Call your child’s doctor nurse before an appointment if you have specific concerns, so they are aware ahead of time. Nurses are great mediators and can be very helpful both to the family and the doctor.
2. Seek all the information that you can:
There are many sources of information about diagnoses, medicines, and treatments. Talk with your child’s providers. Check out national and local organizations on your child’s diagnosis. Talk with other parents. Find information on the web, in the library, and through books. Share what you learn with your child’s providers.
3. Search for providers that meet your needs:
Most health plans now require that your child have a primary care provider. This provider is responsible for overseeing all of your child’s care. S/he provides well care, referrals to specialists, and coordination of care and services. This approach is called a “medical home.”*
Find providers that meet your family's and child’s needs. Ask other families for recommendations. Check out a provider’s knowledge and experience with your child’s needs. Hospital websites often post a provider’s background and expertise online. Talk to providers about your role in shared decision making. Be sure they will understand your family customs and culture.
4. Ask for special consideration if needed:
Let your provider know what works best for your child. If specific things help your child cope or particularly frighten your child, tell your provider. If your child gets sick easily, ask to wait in a special area for your appointment. Tell your provider about your customs and beliefs that may affect recommended treatments. Speak up if an appointment date conflicts with your special plans or holidays.
5. Look for ways that others can participate:
Try to have more than one parent or family member participate in key appointments. If this isn’t possible, try to bring a close friend or neighbor. Two people will likely remember different information from the appointment. They can talk over what they heard after the appointment.
*A family-centered MEDICAL HOME is not a building, house, hospital, or home healthcare service, but rather an approach to providing comprehensive primary care.
In a family-centered medical home, the pediatric care team works in partnership with a child and a child’s family to assure that all of the medical and non-medical needs of the patient are met.
Through this partnership the pediatric care team can help the family/patient access, coordinate, and understand specialty care, educational services, out-of-home care, family support, and other public and private community services that are important for the overall health of the child and family. See www.medicalhomeinfo.org.
Adapted from "Families Partnering with Providers: Tips to Help Families Build Effective Partnerships with their Child’s Health Care Providers," Family Voices Inc. through the National Center for Family Professional Partnerships project, a cooperative agreement with the Division of Services for Children with Special Health Care Needs, Maternal and Child Health Bureau (HRSA 5-U40-06-002), February 2007. Go to www.familyvoices.org for the entire publication.
Return to top
A Big Congratulations to our New Mentors!
Support for Families is happy to announce that during this past school year, the Parent Mentor Program hosted an eight month training session for both the English and Spanish speaking parents seeking to improve their Special Education knowledge and self-advocacy skills.
Our twelve newly trained mentors received training on what Special Education is and is not, who is eligible, the types of services that can be provided, timelines, the six principles of IDEA, placement, procedural safeguards, least restrictive environment, inclusion, etc.
Congratulations mentors, you’re a wonderful group of parents and we appreciate your enthusiasm, energy, knowledge and time. Your participation in this program, allows our agency to help serve a number of families in need. We can’t do it without your help!
Interested in becoming a mentor?
We encourage you to participate in our upcoming Special Education Series scheduled to begin in September 2014. This training offers English and Spanish speaking parents the opportunity to learn about their rights and responsibilities under the Individuals Disability Education Act (IDEA) and to learn how to navigate this system with the support and knowledge of sharing with other parent mentor volunteers.
The Parent Mentor trainings are FREE. Limited childcare is available with pre-registration.
To learn more about the Parent Mentor Programs, please call Joan or JoAnna at 415.920.5040 and/or via email:
Joan Selby (English)
JoAnna Van Brusselen (Spanish)
Note: Registration with Joan Selby or JoAnna Van Brusselen is required. Thank you.
Return to top
Top 10 Tips: Ideas to Improve Parent-to-Professional Communication from PACER* Parent Advocates
PACER’s parent advocates often hear from parents when they encounter certain statements or situations at school meetings that they find uncomfortable or uncertain. These tips are suggestions and techniques from PACER advocates to help parents address some of those concerns, as well as improve communication with school staff.
You may already use some of these approaches while others may be new ideas to consider:
- If school staff presents a new idea that you may be interested in, you may want to ask, “What will it take to make that happen?”
- If a school IEP team member expresses something that you think may be an opinion, you may want to ask, “Is that an opinion or do you have data I can see to support it?”
- If you are uncertain about something in your child’s school day, you may want to ask, “What does this look like in Johnnie’s day?”
- If a school IEP team member says, “Your son refuses to ___,” you may want to ask, “Is that something he can’t or doesn’t know how to do rather than refuses to do?”
- If a school staff member says, “We don’t have the money to do that,” you may say, “I understand that the school district has financial concerns. However, we are here to talk about what my child needs for a free, appropriate public education.” Or you might say, “Please put that in writing for me.”
- If you are trying something new, you may want to ask, “How will we know that it is working?” and “How will data on success be collected?”
- If you want input from all team members, you may want to ask, “What is your professional opinion?”
- If an important agreement, decision, or promise is made, ask to have it put into writing.
- If you are bringing a problem to the IEP team that needs solving, try to clearly present the problem and then brainstorm solutions with the team.
- If a school staff member says, “We don’t know (the answer to a particular question, concern, problem, or issue)” without offering a way to find the answer, you may want to ask, “Who can we invite to the meeting to help find the answer?”
BONUS Tips (We couldn’t stop at 10!)
- Ask a question once and then listen for the answer.
- Keep the main thing the main thing. Too many details may only distract from your priorities.
- When action is required, always ask who will be responsible for seeing that it is done.
- Thank the members of the IEP team or specific teachers whenever possible and appropriate.
*PACER Center is a nonprofit organization serving children and youth with disabilities throughout the state of Minnesota and the nation. PACER is a sister agency of Support for Families.
©2012 PACER Center | ACTion Sheet: PHP-c198
Reprinted with permission from PACER Center, Minneapolis, MN, (952) 838-9000. www.pacer.org. All rights reserved.
Return to top
by Special Needs Inclusion Project (SNIP), a Support for Families program
Behavior is simply an observable action and is not inherently good or bad. All behavior has meaning, and is a form of communication.
Problem or Solution?
Challenging behavior or “acting out” may be a problem for staff when it has a negative impact, but it may also be a solution for children who are trying to get their needs met. It is up to the adults to reframe their view of behavior in order to teach children more positive and appropriate ways of communicating their needs.
Reframing means changing the way we think about something by considering a situation from a different, broader point of view. In out-of-school time, we can reframe the way we see a “problem” with a child by understanding the child’s point of view and using that understanding to teach alternative behaviors.
1) What underlying strengths are shown in this behavior?
This question can be tough at first, but inspiring once you get the hang of it. For example, a child who is “bossy – demands that others do what he wants” – might also be seen as a child with well-developed opinions who wants to be a leader.
2) What is the child communicating?
Begin by identifying a challenging behavior – define it clearly, objectively, and without judgment (e.g., “Student talks with neighbors during homework time” instead of “student is lazy and doesn’t do homework.”)
Then observe before, during, and after a challenging behavior AND appropriate behaviors. You are looking for patterns, like increases in challenging behaviors during transitions.
Finally ask yourself, and the student:
- What is the student trying to communicate, get, or avoid?
- Does the student have the skills or knowledge needed to participate appropriately?
- What is happening in the environment when the student is engaged and is not engaged appropriately?
- How does the student know what behavior is expected of them?
Once a behavior has been reframed in a more positive light, it is easier to see how to help children be more successful. In the case of the child who is “bossy,” we might proactively prevent challenging behavior by helping him find appropriate opportunities for leadership through class jobs. We may have noticed that he needs to be taught new language for asking others to play with him rather than demanding. The same strategies might apply to a child who hits to get her way, coupled with consistent, logical consequences when behavior does escalate to hitting.
<< Quick Tip >>
Remember to listen! When we truly listen, we are more likely to actually understand an individual’s experience, and in turn understand how we can better include them in our programs. Often, children can tell us what accommodations or supports they need to be successfully included, but sometimes adults forget to listen.
An Inclusion Resource Sponsored by:
Find additional Tip Sheets and more information about the Special Needs Inclusion Project (SNIP) at: www.SNIPSF.org. SNIP is a program of Support for Families.
Return to top
Excerpted from the 2013 Annual Report
Because we so value the many contributions and talents of the staff and volunteers who make up Support for Families, it is especially difficult to note the recent passing of three extraordinary people.
Ann Carr was a speech pathologist and highly regarded expert in early childhood and inclusion who began working at Support for Families in 2008 as Director of the High Risk Infant Interagency Council (HRIIC). In 2012 she helped develop the San Francisco Inclusion Networks Project and became its first Demonstration Site Manager. She is sorely missed by all who had the privilege of knowing her. Ann’s family has generously donated a number of professional reference books to the SFCD Family Resource Center Library in her memory.
Kathie Darby became involved with Support for Families when her daughter was born with Down Syndrome. In the early years of SFCD, Kathie helped us build a supportive community where families learn to be advocates for children with special needs. We benefited greatly from her volunteer efforts as a leader of the Down Syndrome Support Group and as an active Parent Mentor. The family’s generous donation of books to our Resource Library will honor Kathie’s memory.
Bill Lewandowski was the Director of Operations at Support for Families since 2004. Bill managed our agency finances, budget and human resources with thoroughness, care and grace. Thanks to Bill, Support for Families has maintained a reputation for transparency in its finances and careful stewardship of grants and donor contributions. We have lost a dedicated and beloved member of our team. This year at our annual Wine+Design Gala we will initiate a special award in Bill’s name to honor a community partner who exemplifies his dedication to our vision and mission.
All of the staff and board at Support for Families remain committed to continuing the high standards and quality work of Ann, Kathie, and Bill. We miss them dearly and send our thoughts and condolences to their families and loved ones.
Return to top
Annual Report Summary
The Support for Families Annual Report for 2013 is now available!
- In 2012 Community Resource Parents (CRPs) provided individualized information and support to 702 families and 365 professionals, making more than 6500 phone, e-mail or in-person contacts.
- Support for Families provided 507 workshops, trainings, and clinics in 2013 on a wide variety of topics based on needs expressed by families. Attendance totaled more than 3,132 parents and professionals.
- 165 active volunteer Parent Mentor volunteers provided individualized assistance and outreach.
- More than 500 other volunteers contributed more than 3,800 hours of services.
230 (unduplicated) family members attended one of the 21 Support Groups active in 2013.
- Total attendance at Family Events exceeded 1,200 children, youth, and adults.
In our workshops and trainings surveys, families told us about the impact of Support for Families on their lives:
- 91.5% reported that they increased their knowledge of their child’s special needs.
- 94.8% reported that they increased their knowledge of resources or services for their children.
- 91.8% learned strategies to advocate more effectively for their children.
- 87.8% increased their ability to communicate with professionals.
The report includes data on the families we served in 2013 and families talking in their own words about how Support for Families has helped them. We have family portraits and photos of some of our 2013 events. The Annual Report also summarizes the agency’s finances. And we are honored to list the names of more than 500 individuals, couples, groups and businesses who made gifts to Support for Families in 2013 to sustain our work!
Click here to download the full Annual Report.
Reviews from the Joan Cassel Memorial Library
We were very fortunate to receive a grant for children’s books for the library. The books below are a few examples of the types of books added to the lending library.
Al Capone Does My Shirts, A Tale From Alcatraz
by Gennifer Choldenko
This is a Newbery Honor book that has a young girl with developmental disabilities as a main character. The setting is Alcatraz Island in 1935, and the children are family members of the staff of the prison. The author does a good job of describing the climate conditions on Alcatraz and how children with disabilities were treated by peers and schools. It is written as a diary of the male narrator, a 12 year old boy, whose older sister has the disabilities. It is written for children ages 10 and up to read but is a wonderful read aloud chapter book for the whole family.
My Mouth is a Volcano, by Julia Cook
How often do you see children squirming and kicking and just struggling to keep from interrupting a conversation before it is their turn. When they can wait no longer the words come out quickly and loudly live the lava of a volcano. It is a books for children in day care on up. Louis tells his story of how he learned to clam himself and listen to those talking and to patiently wait his turn. The book is illustrated in a way that reminds the reader of an “active” volcano. Teachers should consider reading it to their pre-school classes.
Mr. Worry, A Story about OCD, by Holly L. Niner
This is a great little book about a seldom discussed disorder, OCD and its treatment options. The book is based on the author’s son. In the story he is an 8 year old named Kevin. I learned a lot about the symptoms of obsessive compulsive disorder . The therapies used in this book are: counseling, medication and (CBT) cognitive behavior therapy. There is an informative “Note to Parents and Teachers page that is helpful if reading aloud to the family or class.
My Pal, Victor or Mi amigo, Victor, by Diane Gonzales Bertrand
This is a bilingual book with a surprise at the end. It is a good story about the friendship between two young boys. The reader experiences all the activities they share as friends. I wondered where I would find the special needs element in the story. I was pleasantly surprised when I read it at the very end. The listener or reader will find it and smile too. The illustrations are bright and happy. The text is first in English and repeated in Spanish.
My Sister, Alicia May, by Nancy Tupper Ling
Alicia May and her sister are based on two real sisters. We have 3 copies of this delightful book, that were donated to the library. The narrator is Alicia Mae’s (age 6) older responsible sister. She mostly enjoys watching out for her younger sister. Sometimes she finds her to be an embarrassment but most of the time she views her as a “normal” six year old, with a great sense of humor. It is a wonderful read aloud book. The illustrations are lifelike and beautifully crafted.
The Peanut-Free Café, by Gloria Koster
Many of our children have food allergies. The author, a librarian, suggests that number was 1 in 20 children have a food allergy. One of the most common is to peanut products. This is not only a story about how an elementary school used clever methods to create a safe peanut-free environment for Grant, a new student at school. It is also a story about friendaship and the willingness to give up a favorite food so a new friend will stay safe.
Tribute to Another Dead Rock Star, by Randy Powell
This is also a young adult book about Grady, a fifteen year old boy who lives with his grandmother. He travels to Seattle for a musical tribute to his late mom, a heavy metal rock star. There are many issues addressed in this book. Grady faces ridicule of his half-brother with developmental disabilities and the use of the “R” word. He has no real home and is trying to find out where he fits in his family and will they allow him to be a part of their family. Grady is the first person narrator of this story as well as the teen without a home.
Reviews by Elaine Butler, Librarian
Each of these books has been personally researched and requested for review purposes by me for introduction to you, the reader.
Support for Families maintains the Joan Cassel Memorial Library which is a lending library for families and professionals, comprised of multi-lingual books, reference materials and media related to children with disabilities and special health care needs. The library is open during regular business hours.
If you have the title or author of a book you’d like to read, please go to our website and do a search. Go to this link and enter the title or author or subject and click search. If we have the item, call us and the librarian will hold the item for you until you can come to the office to pick it up. Try the online catalog or come and browse the shelves by category, new items added weekly.
Visist our library online at: http://www.supportforfamilies.org/library.html
Return to top
Return to top
Support for Families gratefully acknowledges gifts from the following individuals, groups and businesses, received Jan 1, 2014 through Apr 30, 2014. We apologize for any omissions or misspellings; please contact us so we can correct our records.
Corporations, Foundations, Groups
Adobe, matching the gift of Dawn
Chevron Humankind Matching Gift
Ara & Edma Dumanian Foundation
Give Something Back through the
East Bay Community Fund
Suzie & Son, Inc./Miraloma Dry
The David and Lucile Packard
Foundation, matching the gift of Amy Gavin
P.E.O. Sisterhood, Chapter OX/CA
The Safeway Foundation
Theta Delta Xi
United Transportation Union #1741
Harold L. Wyman Foundation
Emkay and Lara Forest
For the Family Voices of California 2014 Health Summit
Lee Sanders, MD, MPH
California HealthCare Foundation
California Children’s Hospital
First 5 Alameda County
County of Mendocino
Miller Children’s Hospital, Long Beach
Lucile Packard Foundation for
Lucile Packard Children’s Hospital
Patient & Family Centered Care
Tri Counties Regional Center
Sam Darby and family
Tributes and Memorials
In honor of Elaine Butler and in memory of Stephen Butler
In honor of Afra Afsharipour’s Birthday
In memory of Kathie Darby
Carolyn and Sam Darby
Anne and Toshiro Doi
Kevin Dorst, Jeff Unger and their
Deanna and Peter Gumina
Kunihiko and Mari Hiroi
Ann and Douglas Johnson
Marjorie and Leonard Patane
Cheri Lee Sell
Ann Denton Wells and family; Laddie
and Camille Denton and family
In memory of Bill Lewandowski
Return to top